Listservs

PXE Announcements

As a registered member of PXE International, you are automatically subscribed to our PXE Announcements listserv when you provide an email address.  PXE Announcements is a post only email list. PXE International staff post announcements of upcoming events, important activities and breakthroughs. No responses are allowed on this list.

Subscription to the PXE Medical listserv or the PXE Chat listserv is optional. To subscribe to or unsubscribe from the PXE Medical or PXE Chat list, please email Mary LeBlanc.

PXE Medical

PXE Medical is a moderated email list for serious discussion of PXE issues. This list is akin to attending a medical meeting with microphones placed around the room. You can feel free to 'step up to the microphone' and post your question or comment, provided it is one that the whole community would be interested in.

In order to make the information here as high quality as possible, PXE International moderates this list.  When a question is posted, it will go into a queue that one of the staff will review and then release the question to the list.  No stories or personal experiences are accepted.  PXE International staff and Professional Advisory Board members answer these questions based on evidence defined by the medical community.  Sometimes the responses of PXE clinicians and researchers are sought and posted.  This process ensures we have the highest quality information possible. All posts are considered confidential and no posts may be forwarded.
 

PXE Chat

Who Can Participate?  
The PXE Chat list is open to anyone who is registered with PXE International (we have your contact information in our database), and is interested in PXE. This can be individuals with PXE, their families, friends, doctors, or anyone else who is interested.

Scope of Discussion
Think of discussions on this chat list as though we were all sitting next to each other in one large room together. Opinions may vary on some issues, but mutual respect should be universal.

Topics related to PXE, including questions about the care or characteristics of PXE, personal updates, thanks, and social news are all acceptable. Answering questions on any aspects of PXE is the primary reason this group exists. Medical questions are welcome on our companion list, PXE Medical list.

Additional topics of discussion may include finding others in your local area with PXE to arrange personal meetings, or enlisting the help of the group to send support to a specific member who is in need.

PXE International assumes no responsibility for the content or use of this discussion group, or the accuracy of the information provided here. Please double check any information you receive, and keep in mind that what you hear in this group is not a substitute for medical or legal advice. If you have a medical question, you should see a doctor, and if you have a legal question you should consult a lawyer.

Frequently Asked Questions
A list of Frequently Asked Questions for PXE can be found on the FAQ page as well as in the PXE General Bulletin. Please check the website for the answer to your question before posting to the group.

Off-Topic Discussions
Please do not post questions about the operation of the PXE Chat list or send messages asking how to unsubscribe from the list. These types of questions are to be sent directly to the list administrator, Mary Leblanc. Also, virus alerts, chain letters, personal advertising, poems, and other emails of this type are not acceptable.

Archives
To read or search any email list to which you are subscribed:

• Go to http://www.galists.org/read/login/?forum. 
• Fill in your email address.  Click ok. 
• Fill in your password, the one you set when you registered online.  Click ok.
• A list of all email lists to which you are subscribed will appear.  Click on a list.  Messages posted to that list will appear, in reverse order.
• Click on the individual message to read it.
• Use the Search button in the left sidebar to search by key word(s).
• Use the My Account button to change how you receive the lists, whether one at a time or in digest form.
   

Chat List Netiquette

Useful Subject Lines
Before responding to a post, check the subject line for accuracy. If the subject of the email has changed, change the subject line before replying. Meaningful subject lines help the rest of the group follow the threads easily.

Identify Yourself Properly
Any email sent to the group should be signed. You may also include the city, state and/or country where you live. There are multiple subscribers with the same first name, so it is helpful in distinguishing who is speaking.

Restate Key Information
If you're replying to a previous posting, include something to remind the rest of us what the original posting was. You don't need to include the entire original post (especially lengthy ones), but include enough so that your posting makes sense.

On Email Lists, Reply = Reply All
Hitting the Reply button is equivalent to Reply All on email lists. If you want to send a message only to the person posting, use the Forward button to forward your reply email to just that person. Avoid messages that simply say "me too" or “thank you” but add nothing to the discussion. Showing support is important, but if you feel the need to reply, it would be best (and probably more supportive) to say more than just two words.

Be Accurate
If you can't back up your comments with facts, it is best not to speculate. Misinformation spreads quickly. Many newcomers to the group are hungry for information, and can be very impressionable to the comments of apparent "veterans". While we all want to be as helpful as possible, no one will benefit from incorrect information being spread around the chat list. Vague or unsubstantiated posts are discouraged. It's better to admit ignorance than to fake genius.

Spelling, Punctuation and Grammar
Double check your spelling and grammar before posting messages. Without body language and inflections, sometimes postings can take on an unintended tone. Keep in mind the only impression people will have of you is through your typed message, so make sure it reflects you properly. Do your best to use complete sentences and proper punctuation. The reader should not have to decipher your message.

All Caps
Do not type in all capital letters - this is considered shouting and is rude.

Special Effects
Special fonts, or other special effects such as animation or sound, should not be used. Many readers will not have the capability to view these types of messages and they will either appear blank or as an unreadable mess. Turn off HTML in your email program. Postings should be in plain text only. Try to limit signature information posted at the end of the message to four lines.

Attachments
Email attachments, such as files or photos, should not be sent through the list. If there is something you'd like to share, ask the readers to email you privately.

Flaming
Flaming - cruel personal attacks on any one person, or group of people, criticizing their opinions, views, character, or any other personal aspect - is prohibited. Personal disagreements should be handled privately, not through this list.

Lurking
Lurking is a term used to describe people who join a mailing list, and then never post a message. Despite the somewhat negative connotation, lurking is actually very acceptable and even encouraged on mailing lists. No pressure should ever be put on members of the PXE Chat list to "speak up" or "make themselves known".

Advertising
No outside groups or organizations are allowed to post to this email list. In addition, PXE International cannot use its listservs to advertise physicians. If individuals want to send the name of a physician in to PXE International, they can do so. We receive many inquiries for the names of physicians in particular areas and those inquiries are answered daily.

Anonymity of Members
PXE International members remain anonymous unless they choose to post a message. When posting a message, your return email will be revealed to the group. No list of subscribers' names or other information is available to any one for any reason. Subscribing to the list for the purpose of compiling a mailing list or furthering commercial or personal interests is prohibited.

Unsubscribing
To unsubscribe from any PXE International listserv, please email Mary Leblanc.